Finally the appointments and follow ups are slowing down. As we get away from the last day of radiation, our appointments start to stretch out further.
The speech folks gave us some interesting information, they told Rich that he had to continue to do his swallowing exercises for the rest of his life.
Radiation stiffens the inner workings of the throat. It is called fibrosis of the throat.
We learn something every day don't we?
The throat still burns but the eating and swallowing are improving.
Rich's big concern was his lack of energy and stamina.
Dr. Rahim reminded Rich that he had been 'de-conditioned' by the weeks of radiation and chemotherapy and the stays in the hospital. COPD and this hot humid weather made re-conditioning a slower process. I like Dr. Rahim, he is a thoughtful caring person and doctor.
He has a wonderful smile and never comes off presumptuous.
We won't see him until August now! Two months before we have any follow up of course if there are any questions or problems we are free to call.
I am happy to say he is slowly but surely coming around to feeling more like himself.
I'm doing a bit better too. I still lay awake and worry about him at night. The TIA and the Anapylatic Shock still play on an endless reel inside my head.
Staying busy helps.
I will be returning to work on July 4th and I think that first weekend will give us both an idea as to how much better he is feeling.
I am still the chore-master. And I still do some things for him that he used to do for himself.
All in all, that is about it to report.
He has to give himself time to get back into condition. My cautious worry is how does his other health issues factor into healing?
I guess we shall see.
Radiation treatment has been over for one week and Rich expected to bounce back to normal within days.
He was told that he had more recovery time and that the radiation was to drag him down with fatigue for at least 4 to 6 more weeks and some people...well, it took longer.
Rich is not patient in this area.
He decided to mow the yard. This involved cleaning the mower deck, cleaning up the blades, and other things in preparation.
By noon he was exhausted. I suggested a nap.
He did get up and get the yard mowed around the house before he parked the mower. I could tell by the way he walked that he was done in.
He'd been cautioned not to overdo it. But he is also the type of person who will push it to the limit and then pay for it later.
This week has seen up and down days with energy and throat pain.
However he is eating better and doesn't seem to be having the issues he was having last week with water going down the wrong way.
He coughs up nasty mucositis which is a side effect of radiation. He says that his throat hurts worse in some ways than it did when he was in treatment.
Patience little one...I want to say. Patience.
I must admit, if I were in his place, I'd be pushing too.
His neck is starting to heal up where the skin had broken down and was opening up. I think he'll probably scar in one area, but we've decided to call it a "Badge" for what he has been through.
A very kind friend of ours delivered hay today and so we are freshly supplied in that area.
Rich hasn't felt well enough to help with the chores.
I think balance is still an issue when he is tired.
Tomorrow we have an appointment with Speech. I'm not sure but this may be the appointment where they check his swallowing abilities and how damaged his epiglottis is.
Then we meet with Dr. Rahim the chemo oncologist.
We enter the after treatment phase now. The follow up appointments and tests.
No PET scan for at least three months to see if they 'got it all'. I probably worry about that aspect a bit more than I should.
So to sum it up. 7 days after the end of radiation, things are slightly better in some areas and improvement is slow.
I can't believe I let June 15th come and go without mentioning it here.
Monday the 15th, was the last day for radiation or TomoTherapy as it is properly called.
Rich's daughter Stephanie came with Dennis and Ariel so we could all be together for the 'event'.
We kept things pretty low key while in the waiting room. I've watched and waited for nearly seven weeks for this day to come and I notice that other patients were very quiet about their last radiation treatments and we followed suit.
We ran into the 'woman' we met last week as Rich came out of the treatment room. We hugged and I heard her first name called by the nurse. She was in day 14, she had just finished her 3rd chemo.
She told me that she still had my email address and 'almost' wrote to me. I shrugged and said, "It is there if you need it."
Nurse Jackie took our entourage down the hall to Dr. Witek's exam room. Dr. Witek came in and looked around. Oncologists often see the family with the patient and they say the better support a patient had, the better the outcome.
Rich introduced everyone and then Dr. Witek examined Rich telling him congratulations on filling up the paper...meaning, making all of the radiation treatments.
He then turned to the kids and said "This is going to be fun, watch me try and look into your Grandpa's mouth! He can't stick out his tongue and say AHHH at the same time! It is pretty funny!"
Rich wrapped a piece of gauze around his tongue and pulled it out. Dr. Witek looked surprised and took a look into his mouth at the tonsil that had the tumor.
He stood back and laughed. "Rich, you are a man of your word! It looks good! Nothing there I can see. The lymph node has shrunk. If I had to flip a coin I'd say we did it."
He paused.
"Of course cancer is an interesting thing. There is always the chance that we didn't get one or two stray cells okay? But I'm thinking we got it. We'll do a PET scan in 3 months because otherwise your radiation will 'heat' up the PET scan and give false readings. Questions?"
"Should you take my tonsil out doc?" Rich asked.
"Good question and no we won't unless that happens to be a last resort if the cancer came back. Too much possibility of bleeding and risk. Oh and I think your PEG tube can go in a few weeks too."
"Yes!" Rich exclaimed, "I can get rid of Miss Peggy!"
We finally left, our whole group was feeling elated. Rich could still eat almost normally but the pain was there. He still aspirated often while drinking water and the coughing fit he had afterwards was quite awful.
If someone had told me a few weeks ago that I'd be walking out of the UW Carbone Cancer center with Rich feeling pretty good and able to walk, talk, eat, and drink...I'd have told them they were absolutely nuts.
We went out to celebrate with the kids at Perkins and on the way home I took a detour and went to Old Hyde Mill to take some photos.
We got home after 5pm and took naps. I was emotionally exhausted yet happy. No more daily radiation appointments.
Let the follow up appointments begin.
Today Rich sort of had a pre-celebration regarding his radiation treatments.
Only one more to go.
This is a photo from his treatment room ... he is in his mask and the tech put his sunglasses and hat on him.
On Wednesday, April 29th 2015, Rich had his first radiation and chemo treatment.
That was 32 treatments ago.
It was inconceivable that we'd ever see the end of radiation or chemo. But now that last day is looming on Monday June 15th, 2015.
Even last week we felt like the 'end' was still so far off.
Some things to remember about radiation therapy. The side effects don't quit on the day the therapy quits.
The side effects can show up later in life in many various ways as explained in detail by Itzhak Brook MD in his book My Voice: A Physician's Personal Experience with Throat Cancer.
If you read the book or review it at this link you might wonder why on earth would anyone want to go through cancer treatment at all.
It is pretty simple.
The patient wants to live longer.
It is simple. Without the treatment the options are only one.
A slow and painful death.
We go for the treatment to up our odds, to gain some years with loved ones. Or because we feel deeply that we can be cured and look back on the treatment as a huge hurdle in life.
How do we feel today? Optimistic. We may or may not have 'beaten' the odds. We don't know what the eventual outcome is, but we are looking for it to be positive.
This journey is not over. We can't just wave goodbye to a several weeks of treatment and pretend it never happened. The whole process from the diagnosis through all the ups and downs of chemo and radiation has changed us.
It isn't HIM who has cancer. We know it is him, but it is we that went through it together.
The word we includes his doctors, the nurses, myself, his daughter, his son in law, the grand kids, and yes, even the dog.
Neighbors who have helped with meals, mowing yard, coming over to move round bales, my eldest son who came out and worked to help make fencing and clearing the area under the electric fence with a weed eater.
My youngest son, who sent photos and videos of his children to make us laugh.
Our dear friends who came to visit from Missouri and brought their newborn to cheer up Rich...
the list is endless and keeps expanding.
Gary, the broken down old soul who washes car windows at the gas station we stop at day after day. A nameless person until Rich and he shared cancer stories. Gary ~ the guy who gave me a hug when he thought I needed it. And yes I did need it.
Our journey is far from over. We have cleared the first hurdle and feel a bit more stronger to try and get over the next one that is tossed at us.
Today we fight the radiation burns on his neck. I gently rinse water to slough off the dead skin. I reapply Silver Sulfadizine carefully. This process can take up to an hour each time.
We get tired and short with each other. We laugh and hug. I tuck him in at night.
Sometimes we walk around each other like two cats preparing for a fight.
Other times we walk together holding hands.
So we have hope and we have love. We have changed in some ways.
And we remain the same people in many other ways.
It is hard to explain.
But we look forward to each new day.
Because we can.
From June 11th
I took Rich's temperature, it was still low grade and his neck looked pretty nasty.
He didn't want his meds yet again.
I sighed and dropped the phone next to him and told him he could call 911, or the Triage Nurse at the VA. I rattled his truck keys and set them down within his reach.
I informed him that I was doing chores and would be back in a bit.
I returned to the house to find that he was going to co-operate. He took his pain medicine and started to feel better right away.
I washed his hair and cleaned up his neck wearing surgical gloves. I would ask to see the nurse today when we got to the UW.
The drive for the appointment was fairly uneventful except for the heavy downpours of rain that we encountered.
When we arrived at Radiation, Rich asked to see a nurse. Nurse Jackie of UW wasn't available so the other nurse came by. She looked at Rich's neck and said something needed to be done...but she was pretty sure that she couldn't get Silver Sulfadiazine approved unless Dr. Witek saw him and that would not be until Friday.
I asked her about his low grade fever and insisted that she get some answers regarding his neck burns.
Around the corner came Nurse Jackie.
She took one look at Rich's neck and grimaced. She said she'd call the VA Infusion Clinic and have the Silver Sulfadizine ready for us in about a half an hour.
She also explained that a low grade fever was common during the last few treatments, but we had to really keep an eye on it.
Boom. Now I know why Nurse Jackie is in the position she is in. She is quick, to the point and can get things done not only at the UW, but the VA as well.
To anyone going through any sort of treatment. Use your resources, advocate, advocate, and advocate. If something doesn't feel quite right, ask.
We then went to the VA and saw Dr. Faris, then we went on to see the SOP, Swallow, Oral, Pathologist. She took a long time to discuss swallowing issues with us and went as far as drawing a picture of the throat and epiglottis for us. She explained that with radiation the epiglottis can get swollen and deformed causing issues with certain kinds of swallowing.
When we got home I was able to apply the cream and Rich said it was soothing to his skin and the burns.
It was a good day and we sat down and ate a nice supper that one of the neighbors had prepared for us.
This morning, the 12th, he is feeling much better. His temp is nearly normal, and we are getting ready to clean off the neck. We cannot have any of the cream on his neck during radiation.
It looks rather ugly right now but he says it feels much better.
From what I understand the last few days of radiation and beyond can be the worst.
A quote from another patient:
"Radiation, the gift that keeps on Giving."
It seems each day in the treatment of Throat Cancer is a day of some kind adventure.
On our way home yesterday we took a few side trips to look at Rich's old 'fishing' haunts. I played chauffeur and he gave me directions.
We stopped in about 4 places and I think he enjoyed it. We talked about maybe coming back soon with fishing poles and taking a turn at tossing worms into the Wisconsin River.
We discussed driving over on County H just outside of Lone Rock to see the old Mill too.
The day was incredibly hot though and of course I played mother hen and cautioned him about the heat and the sun.
His neck has been burning up from these last radiation treatments. Two days ago I asked if this was normal and the techs replied it was.
Last night I looked at his neck as I gently cleaned it.
No, this was something that concerned me.
Then Mr. Stubborn decided not to take his pain medicine even though it hurt like heck...no it hurt worse than that. I could see his arms shaking. He turned white as a ghost but told me to continue.
I asked him to take his Oxycodone. He refused saying he didn't wasn't to 'get hooked' on it.
I explained that the pain would make him feel more ill.
Nope.
I used Aloe gel on the burns and decided on Thursday that I'd stand in the waiting room until I saw THE nurse.
In the beginning I was told we'd have nurse co-ordinators to see us whenever we had a question or concern.
Rich went to sleep and assured me he'd be fine while I got Morris.
When I got home, Rich said he hurt worse than ever. I asked where.
"All over."
I tried to get him to tell me, was it his throat, the radiated skin, or something else.
When he gets like that he remains staunch and won't tell you a thing.
"I just hurt."
He then told me he was cold. I took his temperature and it was 99. Low grade.
I tried to get him to eat or drink.
"NO."
I tried him to take some Oxy.
"NO."
I tried to get him to take his proper medications.
You guessed it.
Nope.
At 10pm I checked his temperature. 100.1, at 2am I checked his temperature 100.3.
My list from both the Infusion clinic and Radiation clinic specifically tell the patient they must be seen by a doctor with any temperature of 100.5 or more.
Morris laid down next to Rich on the floor and put his head in his paws. He was worried and watched also.
After trying to get some sleep on the couch or the recliner, I finally gave up and went to the upstairs bedroom.
I normally get up at 6am. I'd check his temp then.
~~~ Follow up in the next blog.
The last day of radiation is supposed to be Monday, June 15th. The first day of radiation and chemo was on April 28th.
What a long long time.
I'm sure it is not as long as some folks have treatments for other cancers.
For me? I am getting close to never caring if I drive again to Madison, or park in the UW's parking garage or even see the doors to the VA Hospital.
I am weary of the drive. Even with the short breaks while Rich was in the hospital or those times when his daughter had him, it feels like it has been forever.
Which, of course is not true at all.
Rich's neck looks nasty and it is hot as mentioned in the previous post. We've been applying lotion and cool compresses to try and ease the burning sensation.
Eating by mouth is a bit of a challenge, but he is still doing it. Yesterday we had a great lunch at Grandma Mary's in Arena, WI.
We often stop there on our way back from Madison as it gives us a break.
This morning was a tough one so far. Neither one of us wanted to get up and get going. I'm still delaying going out to do the chores. I'm bone tired in some ways I feel beyond tired.
Rich feels the same way and his neck just burns. I put lotion on it and he sat still. I'm using gloves now even though I've washed my hands well. I don't want to cause an infection anywhere on his neck by accident.
Dr. Witek says his neck will keep cooking for a while after radiation is done.
I've read on message boards that this time [depending on the person] can be up to 6 weeks.
They say: 'Radiation, the gift that keeps on giving [or burning]'.
I guess the positive things to look at are ... the daily trips are nearly over.
Radiation is nearly over.
And then what?
Life after treatment?
Will our lives ever become normal again?
Oh I hope so.
Chores are waiting. And we leave for another day of 'fun and adventure' in an hour.
Tonight though, I'm going to go pick up Morris and bring him back home.
We need his silly face.
The radiation sure is causing Rich's neck to be sore not only on the inside, but also on the outside.
I am amazed at how reddish dark the neck is where he is getting the RAD treatments.
We asked Dr. Witek on Friday if we could use cool compresses to ease some of the heat and pain on the outside of the neck.
He grinned and said I could stick Rich's head in the freezer...he paused and looked at Rich..."and shut the door!" We all laughed.
But the cool compress does work. We have to remember though to continuously keep the radiated skin moisturized. Rich likes Lubriderm the best.
At this point the skin is an angry purple - red color, the sort of color you would expect to see on a severe sun burn.
Outside Rich wears a wide brimmed hat and a cloth to shade the back of his neck. The skin is very sensitive to the sun and will be for quite a while.
Tonight I made an odd mix of foods for supper. I pan sauteed a sirloin tip steak and then cut it into extremely thin strips. I sauteed mushrooms and added that to the strips.
Rich wanted some beans, so I added them to the mix and let the ingredients just come to a light simmer.
The sirloin steak was so incredibly tender and tasty. The mushrooms mixed with the steak and beans actually tasted wonderful. Rich was able to take the thin strips and cut them smaller so it was easy to swallow.
Well, there you go. Dr. Witek told him weeks ago to forget steaks for a while.
I guess we showed him!
Tips:
Stay out of the sun with radiated skin...it will hurt.
Cool compresses help... A LOT
Peppermint tea and honey...cool it off and drink, helps with the sore throat
Lots of lotion...as often as you can do it.
Unscented very very mild soap...don NOT scrub it.
For guys: do not shave the area!
No ICE packs, cool to moderately cold compresses.
Hint: Take a cloth and rinse in cool water. After it is done, put the cloth in a zip lock baggy and stick it in the fridge to keep it cool.
While at home, take a t-shirt and cut around the neck so the material is not rubbing on the burned skin.
After we are done today... Next Monday is the last day of Radiation!
Who is counting?
We are!
My oldest son Ed, came to help do 'stuff' around the farm on Saturday.
We finished the fencing and then Ed used his weed eater to clean around the fence line.
Rich had decided to get on his lawn mower and do some yard work. I worried and fussed over him until I got 'the look' and decided to let him do as he pleased.
No doubt he is feeling a bit better. The throat is sore and raw, but with careful meal planning he is still eating 'normal' food.
After last weekend's TIA, he is now wearing a 'Cardiac Event' monitor. It is made by LifeWatch and it records any events that may occur.
While Rich was cleaning the deck of the mower, his 'beeper' as we call it went off. We dutifully went inside and transmitted the 'event' by phone to the 800 number provided.
The technician asked Rich what he had been doing when the 'event' occurred and then will pass this information on to the doctor who is following him.
Later he had another 'event'.
We don't know what the 'events' are which sort of concerns me.
I assume the tech would tell us if we needed to go somewhere for help.
Rich had another 'event' while sleeping at 6am this morning. Stubborn ol' cuss. He said he was going to sleep and not get up to send out the event recording.
Well. On the flip side, he has been getting back to himself and aside from the difficulty in swallowing, and the very hot skin on his neck, he is doing better.
He is wearing a wide brim hat with a scarf over the back to keep the sun off his radiated neck.
It is good to see him taking an interest in things going on around the farm.
5 more days of radiation this coming week and then one day the week following.
He hopes that he will start to recover the swallowing process soon.
Although we've been told that a person's neck will still 'cook' for weeks after radiation treatment is done.
I kept after him all day to 'take it easy'. Then I realized that after what he had been through, I should stop being a Mother Hen and let him decide what his activities should be.
The waiting room at the Carbone Cancer Center is an interesting place. Our waiting area is familiar to me of course after weeks of visiting it each day.
We see familiar faces after a while. Some patients are old and then there is the real shock of seeing a young person a child...
Some people visit with each other, some stay isolated and don't make eye contact.
Some discuss their cancer and others will talk about anything but their treatment or cancer.
Yesterday as I was waiting for Rich, a woman came into the area. She'd had surgery done to her mouth and throat. She sat down not far from me and picked up a magazine.
Rich was called and I returned to working on the 'waiting room puzzle'.
The woman stood up and paced, then began to walk around and straighten up magazines in the whole area.
She came near me and quietly said, "I'm sure they are going to think me nuts for aligning all of these magazines..."
I saw her eyes and I saw what I thought was fear and loneliness. I put my hands in my lap and gave her my full attention.
"Nope, no one is going to think you are nuts, if you are like me the only way to deal with all of this stress is to stay busy," I replied.
She nodded and dropped into a seat next to me. "Yes! Yes, you are so right!"
Her hands fluttered and then she looked toward the treatment room where Rich had gone.
"I'm sorry but what kind of cancer does your husband have?" Her question didn't surprise me, we often discussed cancers with anyone that asked.
"Throat Cancer," I replied.
She nodded, dabbing the corner of her mouth with a tissue. The surgeons would have some reconstruction to do at some point...I thought.
"Me too," she said. "They got most of it by surgery, but this is my second week of both radiation ... and chemo."
"You are just starting," I said. "My husband has 6 more radiations to go."
"Did he have chemo also?" she asked.
"Yes, he did," I replied. I decided not to share my husband's medical horror stories with her, absolutely she...did not need to hear that!
"We are done with chemo and heading towards the end of treatment."
She sighed, "I'm just so tired and the nausea, and the chemo...ugh...and I lost 10 lbs in the first week alone!"
I reached over and took her hand in mine and looked her in the eyes. The eyes were so scared, so frightened...
"I'm not going to lie to you, this is a tough treatment. My husband lost 10 lbs his first week also and we had to deal with some nausea. Every person's treatment is different, but we've managed to come up with some very good 'power shakes' for him and recipes that are so simple and so packed with goodies..."
Her hands clenched mine as if I'd become a life line.
"Have you gotten the recipes from Jackie?" I asked.
She nodded.
"There is some great stuff in there, start eating and making some easy carbo packed foods now and freeze small packets for the days you are too tired to cook."
I nodded towards the treatment rooms, "I've sort of come up with some easy stuff for eating and he is still eating by mouth. It isn't easy but we are making adjustments."
"Does he have a feeding tube?" she asked.
"Yes, and so far he just flushes it and then adds water and pedialyte because the chemo messes with everything..."
Rich walked out of the treatment room and I could hear his boots on the floor.
"Oh." She replied when Rich came around the corner.
My husband, even with a cane can be a rather striking figure. He normally wears extremely bright colored western shirts. His silver and black hair is bright and touches his shoulders. Most of the hair loss is under the neck so most people wouldn't notice it.
She stood up and Rich told me that we had to go see Dr. Witek. I told him to go ahead, I'd be right there.
I turned to the lady. "I hope we see each other again, perhaps you'd like to talk, or maybe I can give you some resources that have helped me..."
Next thing I know I was holding this woman who had wrapped her arms around me tightly and held on even tighter.
I wrapped my arms around her and held on. I rubbed her back and whispered comforting words like a mother does to her child.
She stepped away and the nurse called her name for treatment.
Then she turned and grabbed me for another hug.
I held her tight until she let go. She dabbed her eyes and then turned towards the treatment room.
Rich looked at me.
"She's just starting treatment for throat cancer," I told him, "I think she needed a friend. She seems so frightened and alone."
I put my hand in his and we walked towards the next waiting room.
Dr. Witek was happy with how Rich was coming along and full of smiles.
However I kept thinking of the woman with the lonely eyes that were so full of fear.
I hoped we would cross paths next week, and perhaps I could help in some way.
Rich and I talked a lot on the way home, but in those moments of silence my mind kept returning to that woman in the waiting room.
Rich and I have gone through such tough times together since the March 13th diagnosis.
No one can even imagine what it is like unless they walk a mile in the patient's shoes.
As the care giver, I can only offer support and give care.
Who was that woman's support?
I keep thinking of her.
I hope to see her again.
Promptly on Monday the flurry of appointments began.
The hospital had done a CT scan of their own along with an echo-cardiogram, X- rays, and many blood draws.
People came and went from his room. We commented on the fact that we felt the door should just be revolving.
The Neurologist was leaning towards a TIA or what they call a 'mini-stroke'.
No progress was made other than testing and more testing on Monday.
Tuesday rolled around and when Stephanie and I got to the VA we found that Rich had been whisked off to his appointment with a Dr. Faris who specialized in Psychology.
Steph stayed at the room while I ran down to Mental Health to see if I could catch up to Rich.
I found him sitting in a wheelchair with his green pj's on. He looked sad and a bit displaced.
When Dr. Faris came for him, I wheeled him into his office. Rich asked me to stay and Dr. Faris asked Rich if it was okay that I be included in the meeting. Rich nodded and said something to the affect, that I was always included in all of his mental health interactions.
Dr. Faris works with Veterans who often have major health issues along with PTSD. Apparently he works quite a bit out of the 'cancer' clinic.
I sort of secretly wondered why we hadn't been seen by him from the get go of the cancer diagnosis.
We talked about health care, we talked about what Rich wanted and needed and we even talked about how the cancer treatments had taken over his life to the point where he felt he had absolutely no control over his life anymore. How he felt that he was just priming for the next chemo treatment and wondering how it would affect him.
Truly this regime of 33 radiations and 6 chemotherapy infusions done at the same time was brutal to anyone. Emotionally it is tolling to those who don't have mental health issues.
I raised a question which had been on my mind.
"I wonder if you have had enough Chemotherapy to be effective for your treatment? I wonder if not having any more chemo would change the quality of your life? Is this a question you would like to ask your Chemo Doctor?" I asked Rich, while holding his hand.
Dr. Faris thought this a valid question and could not offer an opinion on it but said it wouldn't hurt to ask. Sometimes the quality of a person's life outweighs the treatment that is being given.
Stephanie and I had talked about this in great length on our trips back and forth to Madison since Sunday.
When was enough enough?
The past 3 weeks had seen an Anaphylatic reaction that ended in hospitalization with a severity of 4 out of 4.
A mental health breakdown which resulted in a 4 day stay -- and thus this meeting with Dr. Faris.
A TIA that he was currently being tested and run through the mill for, with another 4 day stay at the hospital.
Dr. Faris let Rich and I discuss the issues and weigh them. Rich brightened at the thought of no more chemo.
Our next appointment was with Dr. R. the chemo/oncology doctor. I'd grown to respect and really like this doctor. He was extremely compassionate and always prepared to answer questions. He was supportive of using a voice recorder so we could review our discussions.
Dr. R came out to the waiting room and ushered Stephanie, myself, and Rich into an exam room.
That was a bit unusual in itself.
Dr. R, looked at Rich then at us. He said he'd just reviewed the latest notes. He looked at all of us and then address Rich.
Rich was exhausted and tired of being rushed from one appointment to the next.
As a family, Steph, Rich, and I asked some questions about the continuation or end of chemotherapy.
We talked at length and Dr. R said he had no issue with stopping chemo at this point, Rich had done over half of the therapies and with all of the reactions he'd had and other health issues, he felt that this would not be a terrible course to follow.
The tumor in the lymph node was gone and he felt that the one in the throat was nearly gone. The chemo along with radiation had been working very well, but there was the patient's comfort and quality of life to consider...ending chemo? It may or may not change the final outcome, but...
Of course that had to be the patient's decision.
I held on to Rich's hand and Steph was close to him on the other side. Rich felt that an end to chemo would be in his best interests mentally and physically.
We would continue with the radiation treatments and then Dr. W the Head and Neck Oncologist from the UW along with Dr. R would then put Rich on monitor 'mode'.
After he had healed some from the last radiation, they would follow up with a scan and then continue to monitor Rich.
I can say this.
This decision immediately showed up in Rich as a catalyst. His mental outlook, his physical being began to show immediate improvement.
No more chemo? That was good with us.
In fact it was the uplift that Rich needed so badly.
And it showed as he hammed it up for me just before being released from the hospital.
When we got home that night, Rich used his cane and we went for a walk to see Speedy, the new bull calf.
This was a first. He had energy and a positive outlook for the first time in many weeks.
No more chemo was a good decision, no matter the end result.
5am on Sunday morning I awakened to hear a noise of someone trying to open the bathroom door.
That was so odd. I was sleeping on the couch in the living room so I could keep an eye on Rich.
Apparently I was so exhausted from last week's events and Rich's hospitalization that I hadn't heard him get up.
I didn't grab m glasses, but ran to the door and opened it.
Rich was at the door desperately holding onto the door frame.
When he spoke, he sounded scared and desperate.
"I can't feel my right side," he said, his voice was a bit higher than normal and a bit slurred.
I can say that a multitude of things ran through my brain and they ended back up at the same place over and over.
Stroke.
I put my arms around him and felt him shaking and trembling. He couldn't move his right foot nor help at all with his right hand...the arm hung useless at his side.
I looked around and said to him, "I'm going to need you to hang on with your left hand to the door frame and I am going to help lower you to the floor, okay?"
"I can't move," he said, it was nearly a cry.
"We need to get you safely to the floor, okay? It is the only way I can call for help." I grasped him tightly under his armpits and somehow we ended up on the floor. I had no idea how I did it, but he was now safely on the floor.
I grabbed a pillow from the couch and laid his head on it. I made sure he was laying on his side.
Somewhere in our yearly training for medical emergencies, I recall that we were supposed to lay a person on their side ...
I jumped up and grabbed my glasses and dialed 911.
I also grabbed a blanket to cover Rich in. He was still moaning and crying. I knelt by him as the dispatcher answered.
Thank goodness, I was sure that it was the dispatcher who had grown up only a mile or so away from our secluded location. He would be able to instruct the ambulance to our place.
"911, what is your emergency?"
"My husband who is a cancer patient who is receiving both chemo and radiation has no feeling suddenly in his right side. He is now on the floor, conscious with a steady pulse. He has complaints of numbness and seems a bit disoriented."
I spoke on the phone but have no idea who this totally calm person was that was talking. I know it was me, but I didn't feel calm.
Yet.
I had to be totally calm.
The dispatcher asked for our address and I even gave him the letters ... 'E'... Edward...and the numbers distinctly and clearly. Not a shake or shudder in my own voice.
Who was this person?
The dispatcher hung up and told me that Tri State was on the way.
I continued to monitor his pulse and his breathing and tried to answer his questions.
He was frightened, I tried to comfort him ... and held his head as I dialed his daughter's phone number.
Stephanie answered and I think our conversation went something like this.
"Stephanie, I think your dad may have had a stroke, I just hung up with the 911 dispatcher and the ambulance is on its way. They will take him to VMH and I'll call you as soon as they have him in the ambulance."
I hung up with her and leaped up to push furniture out of the way. I unlocked both the north door and the south door. The south facing door was wider, a stretcher would fit through there.
In between making room I kept kneeling with Rich and holding his head. I talked quietly to him and calmly to him.
Fast forward:
At the ER admissions they asked me if I had POA for Health.
I pulled out the huge Estate Book and dropped it onto the counter, then flipped to Rich's Power of Attorney section, next I handed her the Living Will packet to copy.
I couldn't believe I was actually having to invoke POA. My heart fluttered and I felt the walls closing in on me...
How bad was it? What was happening?
I took the paperwork back from the secretary and she let me in to the ER room where Rich was 'stashed'.
He'd been taken for a CT scan.
The attending doctor said the scan showed no brain damage which was hopeful for a full recovery.
He then proceeded to call the Madison VA Hospital to make arrangements to send Rich via another ambulance to there once he was stable in Viroqua.
I called Stephanie and gave her the information. Still ... this calm person was talking. Stephanie asked if I was okay. I replied yes... and was she? She answered yes also. Then she said, "I'm numb."
I agreed, that was the best description of what I was feeling.
Emotionally detached, yet concerned, and full of an empty numbness.
Steph and I put a plan together. She'd meet him at the ER in Madison as she was closer.
I'd go home and make arrangements for some neighbors to do the farm chores and have the farrier or someone run over and put a round bale in with 5 mules.
After making arrangements, I grabbed Rich's CPAP, some clothes, his blue folder [it has a calendar with all of the appointments in it], the Chrome Book, clothes for me, Rich's VA ID, and two bottles of water.
I shut the door and started the Subaru. Then proceeded to take the longest drive of my life. Twice I had to pull over and regain composure.
On the way in Stephanie called, she gave me her dad's room number and I simply asked.
"I need to stay with you tonight. No way can I go back to the house, okay?"
By the time I'd made it to Madison, Rich was able to move his arms and legs. His right eye had some blurred vision and his speech was clear as a bell.
That night after we got to Steph's house and I had some pizza...oh, did I even eat that day?... Hmmm, I don't think so...
After eating I went over and lounged on their couch.
I woke up much later.
And went to bed.
So many questions, so many unknowns.
